Two years ago, when the doctor placed her newborn son on her chest, Brandi McGlathery gazed at him and felt shock. Something was wrong — baby Eli didn’t have a nose. Born with congenital arhinia, an extremely rare condition, Eli’s story captivated worldwide interest, but his tale has tragically ended. His father, Jeremy Finch, announced that Eli passed away on June 3.
“We lost our little buddy last night. I'll never be able to make sense of why this happened, and this will hurt deeply for a long time. But I'm so blessed to have had this beautiful boy in my life,” Finch wrote on Facebook.
Eli’s case was exceedingly rare. A 2012 report estimated about 41 people had the facial abnormality, which causes severe airway obstruction and is associated with other facial anomalies. Eli was born at 37 weeks on March 4, 2015, in South Baldwin Hospital in Foley, Alabama, without a nose and nasal passages.
In other cases of congenital arhinia, doctors had been able to create a nose and sinuses, but they normally waited until a child was older to perform the surgery. And, Eli faced other difficulties. His soft palate did not develop properly, his brain sat lower in his head and his pituitary gland wasn’t working.
While Eli instinctively knew to breathe from his mouth, he struggled to breathe during eating and doctors gave him a tracheotomy when he was five days old. While the tracheotomy made talking difficult, Finch told AL.com that Eli used sign language to communicate. His favorite sign was cookie and he asked for one every morning.
“Eli was loved by so many. He touched the entire world. I am forever grateful for that,” McGlathery wrote on Facebook. “Nobody feels what I am feeling. I carried him. I birthed him. No bond could compare.”
Finch and McGlathery did not respond to TODAY's requests for interviews and are planning the funeral for Eli. Finch set up a Go Fund Me to cover the costs; if the fundraiser exceeds its goal, they will donate the excess to a charity in the boy’s name. People interested in donating can do so here.